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Saturday, October 31, 2009

Don’t you just wish they (whoever they are) would leave the time alone? Since I get up so early, I prefer standard time. Psychologically speaking the lighter the sky when I leave for work, the more awake I feel.

The best thing about the time change is the extra hour we have between Saturday night and Sunday morning. Have you ever thought about how much difference an hour can make? For some reason I can’t stop thinking about it. An hour can be the difference between life and death.

If I had not been in the exact place at the exact time I would not have met Jim on that summer Saturday in 1968. An hour would have changed my entire life and the lives of my children and grandchildren.

It’s easy to fritter away an hour here and an hour there. Most of the time an hour is insignificant but at other times it can come at a high price. When you miss a deadline by one measly hour, you can lose your job. If you don’t spend an hour studying for a test, you could fail a class. If a flight is delayed one hour, you can miss a connecting flight, which can cause you to miss an important meeting. An hour can be the difference between owning a home and seeing it reduced to smoldering ashes.

An hour can seem like an eternity if a loved one is missing, When Jim wandered off, minutes seemed like hours while we searched for him. The locale was different, but the heart-stopping fear was the same whether he was on our own road, lost in an airport, wandering around the mall, or lost in a crowd at Silver Dollar City. An hour can be the difference between a safe return and a tragic outcome.

Some surgeries only take an hour. I had an obstinate gallbladder removed in an hour. That hour meant living my life without painful attacks.

An hour can be for good or for evil. It can make a life changing difference or be of no consequence at all. When you think back over the last week, can you recall one single hour in detail? Can you think of an hour you would take back and erase if you could?

Those of us with fulltime jobs work 2080 hours per year. Our work day sometimes seems to be made up of slow moving hours. Of course we need to deduct vacation and holidays. When we are involved in a hobby or favorite activity, an hour speeds past on amazingly fleet feet.

Our lives are made up of hours. Those hours meld into weeks, months, years and become a lifetime. In the final hour, we learn the true meaninglessness of time.

We gain our hour tonight while most of us are in bed asleep. An extra hour can be the difference between being well rested or suffering sleep deprivation. It can be the difference between a dream and a nightmare.

But tonight, the time changes and we gain an hour. Have you thought about how to spend that precious extra hour? I don’t know what you plan to do with that bonus hour, but I plan to be sleeping. Soundly. Dreaming sweet dreams. Banking the hour for next spring when they (whoever they are) take it away and we lose an hour.

Sunday, October 25, 2009

I’ve been pushing myself a lot lately and can’t find enough hours in the day to get everything done. This morning I basked in a few rare hours of downtime and watched ice skating on TV. Ladies figure skating has long been my favorite sport, and I can’t help but be amazed at the discipline and talent that goes into each performance. Part of my admiration stems from an inability to even walk on ice. A few years ago my feet swooshed out from under me causing me to fall flat on my back and crack my head on a surface as hard as concrete.

Many years ago I talked Jim into taking me to St. Louis to see Stars on Ice. At the time, Jim was in the early stages and we were hopeful his problems were caused by something treatable like depression or a vitamin deficiency. The trip went smoothly except when Jim drove the wrong way on a one-way street. That could happen to anyone in the confusing downtown area of St. Louis.

We checked into a hotel overlooking the river area and within sight of the Arch. Our room was nice, but the bed had only two pillows, exactly Jim’s requirement. He called the front desk and said, “My wife doesn’t have a pillow.” It was obvious he had claimed both pillows and decided I didn’t have any.

The next year we went to Stars on Ice in Kansas City. As we approached Kemper Arena we were directed into a small parking lot tucked between tall buildings. We couldn’t see the arena because of the buildings crowding all sides of the lot but found it by following the crowd headed to the show.

The very air feels different at a live skating show. On TV it’s easy to be critical when the performance isn’t perfect. At a live performance, the amazing talent of professional skaters shines in a different light. A death spiral seems much scarier in person. The man spins at great speed, swinging his partner around and around, up and down, until you shut your eyes because it looks like he will surely slam her head into the ice. You see the “air” beneath the jumps and wonder how a human can develop such skill. Yes, to be at a live ice skating event, you realize that a great skater may not always skate perfectly.

We were still hyped from the show when we exited the building. We realized we had no idea where our car was parked. Jim had always had a great sense of direction and I depended on him. The January night was frigid and the crowd thinned as everyone hurried to their cars. My stomach hurt when I realized it was going to be up to me to figure out where we were parked.

“We need to go to the other side of the arena,” I told Jim. We walked around Kemper and saw a sidewalk headed toward some buildings. “It has to be down this way, don’t you think?”

“I have no idea,” Jim said. Boy, were we ever in trouble.

“I know it’s this way,” I said with more confidence than I felt. We walked toward the dimly lighted buildings. After a few blocks on the deserted sidewalk we veered down a dark alley. Our car was the only vehicle left in the lot.

It’s been years since I’ve watched a live skating show and found this morning’s televised skating performances disappointing. The skaters fell, popped jumps, or made two-footed landings.

Then, I thought about the pressure on skaters now. Skaters must execute perfect triple or quadruple jumps to be competitive. A champion skater cannot remain in a comfort zone, but must take risks. As a result, skaters make multiple mistakes or miscalculations. When I remember Scott Hamilton executing a perfect back flip, it is unimportant if he fell from time to time or popped a jump.

In a perfect world we wouldn’t falter or fall. But it isn’t a perfect world and we are only human. If we never stretch ourselves, we may not fail, but we won’t know the joy of living our dreams. We can stay in our comfort zone and settle for mediocrity, or take a risk and push ourselves to the limit.

Saturday, October 17, 2009

In celebration of the impending Halloween season, I decided to read something really scary, so I pulled out my prescription fact sheets. My insurance provider refers to the full page, single-spaced, ten-point font sheet as “Participant Counseling.”

The older I get, the more drugs I have added to my arsenal. My health insurance company strongly encourages annual health screenings. Because of this annual testing, it has been easy for my doctor to following my escalating numbers. I’ll admit that he has been cautious about prescribing the maintenance drugs for my accumulating conditions. The preferred line of action was to lose weight, but it seems like I lose the same five pounds over and over.

One of my prescriptions has side effects of dizziness, headache, nausea, gas, stomach upset/pain, diarrhea and constipation (not at the same time, I hope).Those are the minor side effects. My participant counseling sheet for my cholesterol drug has a large section under “caution” which tells me I might have muscle pain or muscle damage which could lead to kidney damage and “a very serious condition” rhabdocmyolysis. I don’t know what that is, but I betcha I don’t want it.

Another interesting part is when the sheet counsels me to not take the medication if I am allergic to any of the ingredients in the product. I am not a chemist and most of the “ingredients” don’t look like anything I’ve ever knowingly taken.

Lately I’ve noticed that television commercials for prescription drugs show active people playing tennis, bike riding, or participating in other activities that make me tired just to watch. The voice over extols the benefits of a prescription for about the first quarter of the commercial. For the remainder of the commercial, a predictable pattern has emerged. A rapid fire voice describes the side-effects and in a slower, soothing tone finishes up with “ask your physician if (fill in the blank) is right for you.” Did I hear something about “sudden death” in that quick disclaimer? It makes me wonder how important a prescription is if it’s supposed to make you happy, healthy and active, but “oh, by the way” it might cause stroke, cardiac arrest, or liver failure.

One night I was taking my medication and my six-year-old granddaughter asked “What do those pills do, Grandma Linda?”

I looked at the handful of pills and started pointing to each one. “This one is for my cholesterol, this one for high blood pressure, this is a vitamin, this is for my knee pain,” pointing to a half of a Tylenol PM, I said, “and this one is to help me sleep.”

“Oh, and look,” she said, “it is two colors—blue to help you get to sleep fast and white to help you stay asleep.”

Her comment shows which part of the commercial sticks with us the best. After all, I’m sure no drug company would advertise if we weren’t more impressed with the benefits of medication than we are with the downside.

With his dementia, Jim took a lot of medication. Through the trial-and-error to find the best drug regimen for him, I diligently read the side effects of everything he took. He was no longer capable of reading them, and I felt responsible for looking out for his wellbeing. Once I mentioned to the doctor that a new drug Jim was taking had a side effect of confusion. The doctor told me that all medicines have potential side effects. That doesn’t mean that everyone has them. He pointed out that no one would take prescription drugs if we worried too much about side effects.

It’s not just prescriptions that have unexpected side effects and warnings. All over-the-counter medication has them too. That night-time cold formula “so you can rest” medicine cautions you to quit taking it if you suffer from “sleeplessness.” On non-drowsy cold capsules, one of the first side effects mentioned is drowsiness. That certainly won’t help your job performance if you take it to help control your runny nose during the day.

One good thing about it, Halloween will soon be over and we will be moving into the Thanksgiving and Christmas season. There’s nothing scary about those holidays and my reading needs to reflect that. I’ll put away the prescription fact sheets and dig out some inspirational holiday reading instead. I’ll stick with the delightful and forget the frightful.

Saturday, October 10, 2009

One of the first things I learned as a caregiver was that I had to take on new responsibilities. Jim was always the mechanic in the family, and until he developed dementia, I had never changed the oil or listened for strange noises cars make from time to time.

We usually drove old clunkers and never left home without Jim’s tool kit. One time our van broke down on a country road, and Jim fixed it with a piece of wire he snipped from a sagging fence. He had us up and running in no time. On another trip in the dead of winter our heater began to blow cold air and Jim fixed it with a piece of cardboard. Whatever happened, he analyzed the problem and had an immediate solution.

Jim began to lose his mechanical skills, and we purchased AAA roadside assistance. I missed Jim’s expert attention to our vehicles, but with AAA and a cell phone, I figured we had the tools to get by. Besides, the card was good for discounts on hotel rooms, air fares, and even at Hard Rock Café.

Eric, our oldest son, worked at a dealership and reminded me when I needed an oil change or tires rotated. When I had mechanical problems, my first call was to Eric, not AAA.

One time Eric was on vacation and my youngest son, Rob, met me at the nursing home to take Jim out to lunch. We had already loaded Jim into the van before we noticed a tire was flat.

Rob crawled under the van and struggled to release the itty-bitty spare from its holder. After changing the tire, he climbed back into the van covered with sweat and dirt.

I said, “I don’t know what I would have done if you hadn’t been with me.” Then after I thought for a minute, I added, “I guess I would have called Triple-A.”

“I just changed a tire in hundred degree weather and you have Triple-A?” Rob asked.

“Yeah, but I’ve never used it except for discounts,” I said. Since 1997 the card had not once been used it for its primary purpose.

My Oldsmobile Alero is getting a little age on it, but overall, it has been a reliable car. That’s why I was caught off guard Thursday night. It had been raining all day and in the back of my mind I was worried that my roads might be flooded. Still, I went to dinner at Country Kitchen with other members of our Alzheimer’s Support Group. After dinner, we popped open our umbrellas and headed for our cars. I was ready to go home where it was warm and dry.

I put my key in the ignition and turned it. Instead of the purr of my motor, I heard dead silence.

“My car won’t start,” I told David, a member of our group who was parked next to me. He looked under the hood and said the battery connections were good.

I looked at my watch and knew it was too late to call Eric. He gets up so early for work that he would be in bed by now.

“Do you have any kind of road hazard?” David asked. Funny, I hadn’t thought about that.

David shined a flashlight on my AAA card so I could dial the number. Within ten minutes, my car was started and back on the road.

Of course, the car wouldn’t start the next morning. I phoned a friend who came over and jump started the car for me.

Now that I have a new battery my car starts when I turn the key. That’s the way I like it. But if all else fails, I have my tool kit—a cell phone and AAA. Better yet, I have friends’ numbers programmed into my cell phone.

I can’t break the habit of calling family or friends for advice about all things mechanical, or to give me an occasional jump start. It’s still nice to know I have three Aces in the hole to use for discounts or in case my friends become wise to me and don’t answer their phones.

Friday, October 9, 2009

My friend, Karen Henley, sent me a link to an in-depth interview with her family and others. Karen's huband, Mike, has early onset Alzheimer's. His family cares for him at home. To read the articles and watch the awesome videos go to http://longisland.newsday.com/projects/alzheimers/

Monday, October 5, 2009

How I feel about autumn reflects how I feel about life. When I think of autumn, I think of colorful leaves, pumpkin pie, apple turnovers, Halloween and Thanksgiving. At one time in my life I dreaded autumn’s dreary cold days and the miserable weather ahead.

Autumn reminds me of trick-or-treat. Being an optimist, I remember the treats more than the tricks. I lived in the country where neighbors were few and far between so we went to town to trick-or treat. Each Halloween night it wasn't long before word on the street led us to the houses handing out homemade cookies or popcorn balls. We also learned which house to avoid. That would be where the cranky old man yelled at kids to “Get outta here before I start shootin’!”

One Halloween, Jim and I had the opportunity to play a trick on our boys. They walked up the road to my brother-in-law’s house to retrieve our dog who had strayed off looking for romance. The full moon provided their only light. Oh, yes, it was the perfect Halloween night. The wind pushed mysterious clouds across the sky and wispy shadows hinted of witches, bats, or werewolves. Jim and I hid in the bushes near the dirt road. Our two sons were talking to each other or they would have heard our giggles. When they got close, we jumped out screaming and yelling. They were only startled for a moment, and it didn’t seem quite as funny to them as it did to us.

Autumn is more than dressing up in costumes and eating candy until we are sick. Our unique inner clocks determine whether the autumn of our lives becomes trick or treat. To some people, retirement means they have lost the focus of their days and feelings of self worth. I look forward to it as a time to spread my wings and fly toward the fulfillment of youthful dreams put on hold for the greater part of my adulthood. I see the autumn of my life as an opportunity to spend time with my grandchildren, write the novel bouncing around in my head, and relax with a good book from time to time.

The autumn of life can be the perfect season to feel young again, a time to taste sweet wine and enjoy heady smells of spice, the scents of fall. Autumn is the time to join in fall festivities and rejoice at the end of harvest—years of hard work and sacrifice.

Chronic diseases like Alzheimer’s or cancer have an autumn in their duration. During the autumn of the disease, it is time to decide whether to spend your days dreading the cold winter ahead, or savor the kaleidoscope of burnt orange, warm golden hues, and cheerful yellows. Do you want to taste the crisp juicy apples of fresh harvest, or put them aside and rue the day they became bruised and shriven?

As we sit at the table of autumn fest, our mindset determines how much we savor the bounty on our plates. It isn’t so much life's physical tricks—aching backs, arthritic joints, a slow numbing of our minds—as it is attitude and ability to enjoy today for what it brings. When we feel the sun on our faces, it helps offset the cold wind blowing at our backs.

We cannot change the seasons, we can only change how we feel about them. Life should never be in a holding pattern waiting for a season to change. Living life in dread of the next season and what it may bring, can steal our joy. I believe that joy delayed is joy lost. The important thing is to embrace today and celebrate the festivals of the current season. It is our choice whether life is trick or treat.

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Early Onset Alzheimer’s

This award-winning blog is a must-read for individuals experiencing early-onset Alzheimer’s. Less common than standard age-related dementias, early onset Alzheimer’s is virtually always a surprise to diagnosed individuals. Linda Fisher, blogger and author, knows the difficulty of this condition firsthand.

In her Early Onset Alzheimer’s blog, she teaches readers not just how to manage such a frightening condition, but also how to live life to the fullest. Her passion for helping others – showing everyone that life with Alzheimer’s is worth living – is a tremendous gift. Thank you, Linda!

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Early Onset Blog has received several blog awards. Due to new Google regulations, the links had to be removed. Past awards have included the #1 Health Blog , Top 10 blog in 2010, Top 25 Blog award in 2010, and a Top 50 award in 2012. We appreciate the recognition, but also understand the need to remove the links.

I went to sleep around midnight and woke up at 4:00 a.m. I tossed, turned, read, tossed, turned, and read some more. Finally more than t...

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Books are a print version of Linda's award-winning Blog. These books are published for the benefit of those without Internet access or who just prefer to curl up with a book rather than browsing online. If you enjoy Linda's blog posts, you might want to purchase the book for a friend or family member.

Fisher began her online journal to share her experiences with families affected by early onset dementia. Her essays provide insight into family life often from a humorous viewpoint. She writes from her experiences as a longtime Alzheimer's Association volunteer and advocate and ten years as a primary caregiver for her husband, Jim.

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I have participated in a link exchange with the Fisher Center for Alzheimer's Research Foundation. They have this blog http://earlyonset.blogspot.com/ listed in their Alzheimer's blogs.

Lindsay Nason wrote about my Early Onset Blog: "I want to thank you for sharing your powerful experience and your creative suggestions with others. . . . Your blog offers a unique and personal insight into this disease, which can be such a comfort to other members of the Alzheimer's community."

Thank you, Lindsay, for your kind words and for including the Early Onset Blog on your website.